M is for Mighty

What are those letters M. S. about?

Persistence and Probiotics

Tecfidera is here! Persistence has paid off!!!! Starting tonight we will be shaking this Avonex funk and starting over with Tec!

We have decided to try it with probiotics this time. The Tecfidera Tummy Trouble thus far has been very limited nausea, no real acid or heartburn symptoms, but intense cramping, bloating, and gas pain. That would probably explain why the Prevacid and Prilosec didn’t really help.
In researching probiotics, I found there are many different kinds. Most of you probably already knew this, but it was news to me! The only one I was able to find that addressed gas and bloating was Lactobacillus plantarum. I then started at Wal Mart because someone posted that they used Culturelle from Wal Mart. When I started reading labels, it was primarily Lactobacillus rhamnosus GG. As I started looking through the different types, I was stunned by how many there were. Most of them were acidophilus, but I found two at Wal Mart that contained Lactobacillus plantarum. Probiotic Pearls High Potentcy was $20+ but the Spring Valley was only about $10, so we decided to give that one a try. We can always move to the pearls if this doesn’t work! 

I will let you know how it goes!

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Eureka!

Wow! We got a call from the neurology nurse today with a confirmation number for our insurance preauthorizing Tecfidera from July 23, 2013 – July 23, 2015!  Yay!!!!

Then, when I step back, it seems an odd thing to celebrate.  “Yay!  I have been approved for a medication that makes me feel like I want to turn my guts inside out and scrape them with a chisel!”  My, my, how life has changed!

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Pharma-wait and- cy

Is anyone else having trouble getting their Tecfidera? It was supposed to arrive Thursday but didn’t. Then we got a call saying it would be here on Tuesday. If we stayed “on schedule” we would run out of those beautiful rattley morsels on Friday evening, so we decided to ration them. Perfect! Fewer stomach cramps – well only half the day anyway, and still a steady stream of meds. 
 
Talked to the pharmacy again on Monday and they said they are still waiting for insurance and can’t get the Tec to us until Thursday at the earliest. 
 
After a few days of no meds and some creeping numbness, that Avonex in the fridge was looking pretty inviting. 
 
We call this “calculated risk.” We live 3.8 miles from the hospital and it takes approximately 10 minutes to get there. 
 
Onset of Anaphylaxis for intravenous is usually 5-30 minutes. In 80-90% of people the first symptom is a skin reaction. Get where we are going with this?
 
Thursday evening arrived with no ETA from the pharmacy and everyone frustrated with Blue Cross.  
 
Here we go! 
Avonex in….. Collective holding of the breath…. Kids all gathered and watching….. (For moral support I am sure)
Blessedly anticlimactic!
 
Unfortunately, whether it be from a med break and then launching into our first full dose of Avonex, or a lack of preparation (not drinking like a camel the day before and the day of) we discovered what “flu-like symptoms” truly means. 
 
The fever started at about 10pm. Muscle aches, around 11 or so. Time for an NSAID. Oh yeah…. we were supposed to do that BEFORE the injection! 
We thought of that one too late. The fever increased to an estimated 103. Chills? Heck yeah! Those hit around 1am. Spasmodic cramping joined the party at about 2am. Somewhere around 4:30am the fever broke and we were able to get some sleep. 
 
On the up-side, other than feeling hungover, REALLY tired, and just a teensey bit cranky… Okay…. A lot cranky…. Friday was on its way to being a normal day! Yay! 
 
After a nice weekend with our family, we are ready to fight the fight again. Watch out Blue Cross! Here we come!!! 
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“The Patch” for MS?

“The Patch” for MS?

Keep in mind this is a very small study, but the concept behind it is innovative and I find that extremely exciting!

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Dare to Dream!

 

A  couple of days ago I was having a hard time wrapping my head around M S and the implications for our family. What will it look like in 10 years? 20? The answer is, who knows? It could look exactly the same as it looks today or it could be drastically different.
As I pondered this, I told the love of my life that I was angry that what MS really took from us, was the ability to dream. The Rubicon? Rome? Australia? Another degree? A career change? Being able to maintain this career? Putting kids through college? Which dreams are realistic?
The best answer we could come up with, is keep dreaming, and then make those dreams come true. Don’t wait. MS doesn’t just make our future uncertain, but it reminds us that everyone’s future is uncertain.
Dare to Dream!
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What is this feeling?

What is this feeling? I am not sure if it checks the box for anger or depression on the grief cycle. Perhaps the acceptance stage lends  itself to a passive  aggressive sort of approach to dealing with feelings associated with MS. I mean think about it… We are talking about grief here. The best you get is acceptance for a reason. I think it is unreasonable to think you will embrace whatever causes you so much pain. 

 
Signs that we are at the acceptance stage: planning for the future including cruise control, automatic transmission, and a one story house. In addition, eating healthier.
 
Signs of depression: that sinking feeling that this will never go away. It will never get better. It will likely get worse.
 
Signs of anger: resentment that MS controls our thoughts, conversations, and future plans.
 
Denial and Bargaining…. Hmmmmm… We are both pretty pragmatic. I think we are pretty efficiently spending little, if any, time here.
 
I guess the thing I am currently ruminating is the concept that acceptance is as good as it gets. That kinda sucks.
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Q is for Quinoa

Qui-what!?!?  It is commonly pronounced Kee-nwa. According to the ever trusty Wikipedia, it is a “pseudocereal” rather than a true cereal or grain.  Rather than being a member of the grass family, it is a chenopod.  That makes it more closely related to beetroots, spinach and tumbleweeds.  (Sounds Yummy!)

Quinoa seeds contain essential amino acids like lysine and are a good source for calcium, dietary fiber, phosphorus, magnesium, and iron. Many sources claim that Quinoa is a “complete protein” and has an almost perfect balance of amino acids and actually helps boost the protein value of other grains!

Quinoa is gluten-free, easy to digest, versatile, and easy to prepare.  In fact, because of all these characteristics, quinoa is being considered a possible crop in NASA’s Controlled Ecological Life Support System for long-duration human occupied spaceflights.  Didn’t you always want to be like an astronaut?

Another interesting tidbit, the United Nations General Assembly declared 2013 as the “International Year of Quinoa” in recognition of ancestral practices of the Andean people, who have preserved quinoa as food for present and future generations.

To ease my family into the appearance and texture of this unique morsel, I started with white quinoa and substituted it half and half with rice.  The looked at it a little critically, but ate it up.  (Even my texture detector youngest did okay!)  After I became more bold (and even my pickiest eaters determined it would not kill them), I started substituting it completely and have incorporated the red quinoa as well.  One of the first things they noticed (especially my teens) is how quickly they are full… or “stuffed” would probably be more like it.  They are still working out the serving size.  J

A couple of favorites:

Breakfast burritos with egg substitute, quinoa, green chilies, black beans, and taco seasoning.

We also like to make a casserole similar to Hamburger Helper’s taco version and I started substituting quinoa for the rice.  Yummy!

A work in progress is the red quinoa lasagna.  The flavor was great and it was SUPER filling, but it just kind of went plop on the plate and didn’t look very appetizing.  Perhaps some egg substitute and flax meal to glue it together better?  We shall see!

A future attempt will be a recipe I stumbled across for “Quookies.”  I just really like the name!  J

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Tecfidera Tummy Trouble

We started Tecfidera on June 13th (120 mg morning and night) with the first full dose (240mg morning and night) on June 20th.  All in all, it is going well.  With the starter dose we could be pretty foot loose and fancy free about taking it with or without food, without additional meds, and without significant side effects.

The only side effect that reared its head in the first week (at least for the person taking the pills) was one instance of the “flushing” everyone talks about.  It is where you feel hot and your face, head, neck, etc. gets really, really red like a sunburn.  It lasted about ten minutes and then went away.  Not too shabby!  Confidently and boldly was the manner in which we took the next step.  About three days into the full dose, BAM! Sucker punch to the gut!

When they say “gastrointestinal incidence” and “abdominal discomfort” on the menu of side effects, they mean gut-wrenching cramps, gas, and bloating.  Oh… and don’t forget the “flushing” aka hot flashes with a rosy flair!  It is like PMS and menopause all in one!!!

I digress….

Solutions?  We have successfully managed the hot flashes…ahem…. flushing… by including a low dose aspirin with the morning dose.  Someone suggested Prilosec for the “abdominal discomfort” but after 11 days on the stuff, you would think we would see a difference.  We have tried all different kinds of breakfast and dinner combinations, hoping to stumble across the offending food or uncover the miracle soother, but to no avail.  Does anyone know what the biochemistry is for the “abdominal discomfort?”  Any ideas on what might help?

I know the side effects are supposed to subside in 4-6 weeks, but this part sucks!  Suggestions are welcome!!!

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Dot to Dot anyone?

The spotty game has been an interesting one.  It seems to be improving, however, so that is good.  After the huge outbreak last month, new ones seem to be arriving with fewer friends.  They are also a kinder, gentler version of the species.  The pattern we have noticed is just as the old outbreak heals, new ones arrive.  We thought that cycle was about a week, but the fewer little red friends crop up, the faster they heal; thus, shortening the inflammation cycle.  Perhaps whatever caused the little buggers in the first place is still working its way out of the system?

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Seeing Spots!?!?

Seriously!?!? We stopped Avonex, took nothing for a week, started Tecfidera and BAM! 20+ new spots!  Where are they coming from?

We decided to continue with Tecfidera since they have been around longer than it has and they don’t seem to be getting worse.  (We are still only 3 days in though). We have stopped all supplements, but that hasn’t seemed to help either. Puzzling!

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